Friday, May 17, 2013

How the OIT Consult Went

I have been asked numerous times how the appointment went. Apparently, lots of people I know are as excited and curious about this as we have been, and that warms my heart. I have been thinking about this post for days now (since the day of the appointment). I have sat down to write it at least twice and have written it in my head 3 or 4 times over. Of course, every time I try to actually write the post, I suddenly feel overwhelmed and exhausted by the amount of information I received, the emotions some of it brought up, and some events that have recently happened within our allergy support group (not directly to us). So I have put my "pen" down several times to help sort my thoughts as well as all the information. Now it is time to share the good (and it is mostly all good) and the scary.

Note: This post is not likely to be short, and may contain typos as I did not have time to proofread.

I have a very short list of doctors that I have met that I love. Very short. In fact, I can count them on one hand, and the number of doctors I don't like far outnumbers them. This man, we will call him Dr R., falls very far at the top of my love list. Dr. R is a very talented doctor who works as much, much more than just an allergist. In fact, I'm amazed that the man has time to breathe with all the things he is committed to doing in his practice. Yet, he made me feel like my son and his allergy were the most important thing in the world at that moment. Within the first few minutes of talking he had even taken enough notice to ask me what I had studied. Once I mentioned my MPH and infectious disease/immunology background, he switched to talking to me as a peer in research, which rarely happens with medical professionals. It was refreshing to talk statistics, abstracts, studies, and biological pathways and how they relate to what my son is and will be going through during OIT. I have a new understanding of the entire process as well as what information we need before we start.

Big Monkey and Mama entertaining ourselves while we waited for Dr. R

Dr. R started offering OIT because he was "tired of seeing all the kids in the ICU from anaphylaxis." So he decided to do something about it. I am thankful for that. Dr. R tailors his protocol to each patient based on their IgE numbers, history of reactions, and response to treatment along the way. He does things slightly differently, which is both scary and exciting at the same time. His protocol is as follows:

Dr. R will take the results from all the blood work we have ran and will determine starting levels that he feels are safe for Big Monkey. We will then go in for a "food challenge" to find out the dose that Big Monkey can tolerate without any reaction. These amounts of peanut protein will be far far smaller than a traditional food challenge given to someone who tests negative for a food (it will be so small to begin with that it will be like there is nothing even there). We will then be sent home with a dose that is lower than the highest dose Big Monkey can tolerate. For the next 2-3 weeks I will administer one dose a day with the amount increasing ever so slightly over that time. Then we will go back to the office for another "food challenge" to see how much more Big Monkey can tolerate and start the 2-3 week cycle again.

Is this safe? Well, one thing I learned from Dr. R is that he's not going to answer yes or no. Instead he was honest and said, yeah there are risks. Big Monkey will likely react. However, the hope is that we will do this right and all big reactions will be in Dr. R's office and not at home. Dr. R sent us home with a very extensive and aggressive anaphylaxis action plan. So I now have epi-pens (which I have carried for years) but also 3 other medications to treat an anaphylactic reaction with (followed by an ER visit of course). Sounds scary yes, but we have to be prepared for anything as we embark on this journey. Remember that we live with this threat every time Big Monkey eats. Any meal could result in a reaction. All it takes is one mistake. At least during OIT, I know when I administer a dose. I can watch. I can wait. I will KNOW. 

So why are we waiting? Well, in order to make this process as safe as possible, Dr. R needs to know Big Monkey's real IgE level to peanut. He doesn't want it to be "inflated" by high reactions to seasonal allergies. He wants to make sure he knows exactly what he is dealing with and that everything else is under control FIRST. Since Big Monkey has never been tested for environmental allergies, Dr. R decided to run a full environmental panel. He saw some physical evidence in his exam of Big Monkey to suggest that we do have some seasonal allergies to control first. We will have results in a few weeks and I will have a phone conversation with Dr. R about what he thinks. We do already have a standing appointment with Dr. R for July. It's currently set as a food challenge appointment so that we have the longest amount of appointment time possible just in case we decide we are at that point in July.

Only time will tell. So now I need to set up my new anaphylaxis action pack (pre-syringed medication and epi-pens all in one bag) so I can start taking them every where we go (I think I will forever be carrying a purse the size of a diaper bag) and we wait and enjoy summer. At least for a few months we can now enjoy planning some things, swim lessons, and whatever else we want!

I obtained a lot more information in our hour conversation, but most of the rest are details and things I needed to understand and be prepared for. This will be an undertaking, but the silver lining? He gave us an estimated of the entire program taking hopefully not more than 6-9 months. Of course, this will not be a race and if Big Monkey needs longer, then we will take longer.

And of course we had a great time hanging out with Grandma, Grandpa, and Papa Monkeys!

Pool time!
The Giant Geotrax we setup


  1. Wow, what anincredible journey! I'm so glad to see such advances in allergies!

  2. It;s been around for awhile, but a lot of allergists won't touch it with a 10 foot pole. I think there are only about 10 or so allergists in the country who will do this in private practice (that we know of so far). Hopefully more and more will join in as it really does offer and option to those who cannot eat foods (and I know of kids that are allergic to multiple foods). Dr. R informed me that he has a few patients that before could only eat about 4 food items and he now has them able to eat 50-60 foods, which is amazing and wonderful!